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Post by trishasmom on Jan 8, 2007 22:20:20 GMT -5
Hi Carol! Do I recognize you from DownSyn? "She's not typical, she's Trisha!"
yes I am on the DownSyn list and a few others as well. It's been many years like I said since I was here. I just happened to come across an old post from 1999 that I replied to Lucy and thought I should go check Uno Mas out again. :-) Right now the school district and I are not seeing eye to eye as usual. I asked for sign language instruction and they want to give her 1 hour a month consultation for her and the staff that's total not each. So that is what 12 hours a year? And yet typical kids have what 12 years to learn english? Does that make sense? They think if they teach her a word here or there that's all that is needed. The sad part is she has more sign vocabulary than most of her teachers. It's true she uses approximations due to fine motor issues but again if they had the OT work with her more than might improve as well. Can you imagine taking French and they have the regular english teacher consulting with a french teacher one hour a month and consider that teaching the language? I think at the next IEP meeting I am going to say that they can only use x amount of words to express themselves and see how they like being limited in their way of communicating like they are doing to my child. Ok getting off my soapbox now. :-)
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Post by trishasmom on Jan 8, 2007 21:50:34 GMT -5
Hi everyone, I am a new "old" member. I think it was in 1999 that I might have posted last. Anyway I just wanted to introduce myself and my child. My name is Carol and I am mom to Trisha who has DS/Autism and a host of other dx's. Trisha is now 14 soon to be 15 in February. Where does the time fly? So that means Trisha was around 7 or so the last time I was here. I look forward to hearing from everyone and wish everyone a prosperous new year.
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Post by trishasmom on Jan 15, 2007 22:22:49 GMT -5
My son is another one with the high tolerance to hot/cold and pain. My question is...does my son not feel the cold or does he feel and doesn't know what to do about it? That is why I suggest parents go out with their kids and model the behavior of putting on a coat when you have these particular feelings, the feelings of being cold. When my son was little, I had to teach him to pull his hand, foot whatever away from hot water. I would start the bath water and he and I would practice feeling for the temperature. We also spent a lot of time practicing jumping out of a tub or shower if it was too hot or cold. His inability to figure out what to do when confronted with scalding hot water scared the heck out of me. This is one of those behaviors that I had to teach him for my peace of mind. I knew I was never going to be at ease until I knew he would recoil from too hot or too cold water. I know people would say, just turn down the hothingyer heater, but what about hotels, friend's home etc...? mb I can't speak for your son but I know with Trisha she was still using her leg when her kneecap completely went out on her and even then she didn't show much pain. The doctor and others who have had the same thing happen to them said that they were amazed that she was even still walking and that she wasn't screaming in pain. One of the reasons the knee went out completely is that we had no clue that anything was wrong until it happened. If she had shown any kind of pain we would of course had checked it out much earlier. It scared me more than it seemed to affect her. She was sitting on the floor and when I looked at her there was this hugh indentation where the knee should have been. I thought she had just sat down it wasn't until I saw the knee that I realized her leg just gave out. She did great with surgery and loved being in the wheelchair for 6 weeks. She did show some pain after the surger but she was only on pain meds a few days before she was ready to come off them. My friend and my niece both had similar surgeries and they said that they had terrible pain long before they ever had to have surgery and their kneecap did not slide to the side as hers did. So yes, I think some of our kids do not feel until it's either extreme or until damage has been done.
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Post by trishasmom on Jan 10, 2007 18:38:17 GMT -5
How would you handle that situation? Chris truly would freeze outside before he would come in and get a coat
So yes girl I get what you are saying on the easy cases BUT what bout the ones that are not that easy, could you advise more
I'm not MB but here are my thoughts for what they are worth. I do understand where you are coming from, Trisha too has a high tolerance to pain and physical feelings. By the time she is hurting enough to realize it something is seriously wrong usually. That old adage that when they get cold enough or hungry enough they'll come in out of the cold or they will eat doesn't alway work with some people such as Trisha. What I do is that whenever it's time to go anywhere I say get your coat, she needs some help putting it on due to limited range of motion but we are working on that as well. Anyway it becomes part of the routine whenever we go out is to get the coat. Now I will admit come warm weather at first she still wants to get her coat but usually within a few days she gets the message she doesn't need her coat. We are working on some worksheets to teach her what kind of clothes you wear during different seasons and different kinds of weather. The first time I see her instincts are starting to kick in on their own then she will be encouraged to get the appropriate outer wear but until then I will continue to work on teaching her when and what to wear and guiding her along. It isn't the DS that is causing this so much as it is the autism on other dx's.
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Post by trishasmom on Jan 9, 2007 22:12:38 GMT -5
I have been reading with great interest on this subject and want to add my two cents which probably really isn't worth two cents. :-)
One thing I have learned over the last 14 almost 15 years is that I can't compare my child to what other kids be it typical or other ds kids are doing. In some areas Trisha does pretty well but in other areas she is functioning on a toddler level. Now my question is would anyone send a toddler to the store and expect them to know how to shop? Would a toddler be allowed drive a car or be in charge of their own medicine? Some things she has trouble with not because of the DS so much but because of the Autism, other things it's not the Autism it's the low muscle tone, if it's not the other things it's HOH etc. So I let her try and will always let her try but somethings no matter what consequences she gets will always be difficult for her. Now there are things that I chose to let slide because I am a single parent and I need a break so I pick and chose what battles I fight when I can. We just discovered that Trisha has basically under developed hand skills in 6 out of 10 of the hand skills assessment and only 4 out of the 10 have emerging skills this limits some of the fine motor activitives she can do correctly but we still work on those skills. Trisha has no concept of danger, she is just learning that if something is hot she waits to eat it but she still doesn't get if it spills on her it could burn or hurt her and I am not about to let it happen in hopes she learns from it. It's just like she doesn't get it that a car could hit and hurt or kill her so of course I would not let her put herself in jeopardy to learn that. However, when I know she can do something and she doesn't she pays the consequence, as in when I ask to turn her music or tv down and she doesn't I take it. I just filled out an OT assessment the other day and the questions on it were things like does she manage her own medicine, does she know when food is spoiled, does she give directions to someone who is lost, well it was 11 pages of these kinds of questions and most of my answers were not yet, does not apply and are you kidding! or she is non-verbal. Now if they asked things like can she manipulate electronic equipment, figure out the computer, remember where everything goes, has a memory like an elephant then my answers would have been yes to all of them. I guess what I am saying with this long winded reply is that where Trisha can do I expect, where she can't we modify or adapt and where I'm not certain, I'm still not certain, but we don't stop teaching, I accept her limititations as long as she has been given the change to try and yes even to fail and I have no problem giving her the help she needs and I don't care how old she is, if modifications is what she needs to survive or be semi-independent then so be it. :-) If I didn't make any sense just put it to old age and being tire. :-)
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Post by trishasmom on Jan 15, 2007 23:09:09 GMT -5
Chris truly struggles with the "WH" questions Right now that is our main issue and I am lost on how exactly to help him Any suggestions, I am open to ALL So much is in the wording for him, KWIM like if you ask him when is your birthday, he knows that but as Susan and I were discussing say you say to him when were you born he is lost. K, in that example he is lost more by the word "born" not the WH "when" but he truly has lots of issues with this and I know school works on this with him for years and even speech does too BUT it remains a big issue for him So any ideas of how to help that we may have overlooked?? I am sitting here wondering if he still goes on the last few words like maybe instead of saying when is your birthday say your birthday is When?? Hmmm KWIM you think that may help?? Cause honestly if ones ask him when is your birthday he will start rambling bout cake, presents and such BUt he does know when his birthday is. Could it be in what he is hearing?? Thanks in advance CC ~ Trisha also struggles with "Wh" questions and her autism also shows up with wording. At home we say put something in the trash at school they were using garbage and she just starred at them. So now we have to make sure if there are more than one word/way to say something we vary it so that she learns different ways to say the same thing. For instance when she is reading one of her books I might say find the dog and then the next time I might say show me the dog. At school I have told them if they say something and she doesn't respond try saying it a different way and see if that helps and usually it does. One thing I have noticed is that teachers, parents, professionals we all sometimes forget we have to remember to teach them things that we just take for granted that they already know. Before they can understand what you mean when you say "find" or "tell" we have to make sure we have explained just what "find" or "tell" means. :-)
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Post by trishasmom on Jan 10, 2007 22:08:37 GMT -5
wow, I am so impressed by your kids. When I ask Trisha how her day was all I get is "day" "school" just like that. So then I will ask did you see Jessica and she will attempt to say Jessica and then we get the "day" "school" again and it goes no further. If you ask her what she is doing you get what sounds like a hrrumph! She tends to repeat the last word she hears. There is not conversation with Trisha other than one word utterances at best. :-(
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Post by trishasmom on Jan 25, 2007 13:59:29 GMT -5
I'd like to warn about using straws. For some children the straws cause them to take in too much air as they are getting their liquid and causing other problems. My daughter is not supposed to drink from a straw because she has aerophasia (sp) which causes her to what I call spit up after she eats and causing her to have a lot of bloating which as we all know isn't a good feeling. She rarely drinks from a straw but when she does she learned it well, and after she eats she is supposed to sit still for at least 5-10 mins before being active to reduce the spit up regardless if she uses a straw or not. But for the bottle I totally agree with the other parent who said follow their cues as to when they are ready. It's the same for toilet training, you get a better response when they are ready than you do when you try to make them be ready. When my grown typical child was small and still on the bottle I caught him at the fridge with his bottle open and pouring more milk in. I looked at him and said if you can fill your own bottle then you can drink from a cup and asked him to throw it away. He did with no problem so I knew he was ready. If he hadn't then we would have waited a bit longer. Oh by the way, more milk was on the floor than in his bottle. :-)
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